Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 -Hello, My son sounds quite similar. Hyotonic, reflux, GERD, Fundo and persistant vomiting. He has also had a pyloroplasty surgery (opens the opening out of the stomach to help empying) so his emptying is " normal " now. He still vomits every day and to be honest we really haven't found anything that works. I did want to tell you that he had very poor weight gain until we tried a formula called Peptimen Jr. When we put him on this new formula (he is g-tube fed) he jumped from the 10% up to the 50% in about three months. We all thought we had just weighed and measured him wrong! Since then we have had no problem with growth. This formula is partially broken down and easier to digest. Hope this is some help. It is sure worth a try, we had used Alimentum, Pediasure, Compleat and this is the only one that worked. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Hi Kim, Theresa has had motility issues her entire life too. We finally were able to get her to gain weight using vivonex formula...warning it is a prescription one and one of the stinkiest ha. It is a specialized elemental amino acid formula for ages 1 to 10. Its in a powdered form that you have to mix though and is extremely expensive. Our insurance covers it without question though. It is worth asking about. Its meant to manage maldigestion and malabsorption (not to mention that it produces very little waste so it also does help with constipation problems). We still use reglan, zantac, prevacid, Miralax ( I love that one). senekot, and milk of mag to keep things moving along and a little less acidic though. Since starting on Vivonex in I think it was late Nov or Dec.. she went from 17 lbs to a whopping 32 lbs! She had been on several others and was still losing weight. It is also the only formula they can find with no sugars in it. She can have no fructose, sucrose or sorbitol in any form. Makes finding even specialized formulas difficult. Good luck! Kimberley --- batt504 wrote: > Hi! I am one of the newer members who doesnt' post > often. I haven't > posted, though I read daily, becuase my son hasn't > been formally > diagnosed. We have an appointment in Atlanta in > August. I have > gotten some good info from this board, and it helps > to know other > people are dealing with the same issues my family > is. Anyway, I am > writing to see if anyone has had problems with GI > motility and what, > if anything, worked for their child. A brief > overview: Russ is 17 > months, very hypotonic (doesn't roll, sit, etc.),but > is alert and > attentive and can use his hands when he is in a > supported position. > He has had trouble with reflux since early on, was > failure to thrive > and underwent a nissen fundo/Gtube placement. > Wretched like crazy, > which caused the wrap to herniate, had a re-wrap. > His last UGI > showed that his tummy empties slowly. He isn't > gaining wieght and > still vomits daily. Has been on reglan, zantac, > prilosec, with no > relief. > Has anyone had any experience with erythromycin or > domperidone? Any > special formulas? Any suggestions for ways to bump > calories without > adding fluid? I am still seeing the surgeon, but not > helping. I am > taking him to a new GI, but not until September. I > just hate to see > him suffer! Sorry for the long post, thanks for any > input. Kim > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 No, we are hoping that Dr. Schoffner will address the carnitine issue, no doc has even mentioned that or the mito cocktail yet. Re: motility questions Kim, Has his carnitine level been tested? My daughter was a lot like your son at the same age and she had a carnitine deficiency that caused her to vomit up to 20 times per day. Once we started her on Carnitor the vomiting completely stopped. It seemed like a miracle to us! It may be worth checking... batt504 wrote: Hi! I am one of the newer members who doesnt' post often. I haven't posted, though I read daily, becuase my son hasn't been formally diagnosed. We have an appointment in Atlanta in August. I have gotten some good info from this board, and it helps to know other people are dealing with the same issues my family is. Anyway, I am writing to see if anyone has had problems with GI motility and what, if anything, worked for their child. A brief overview: Russ is 17 months, very hypotonic (doesn't roll, sit, etc.),but is alert and attentive and can use his hands when he is in a supported position. He has had trouble with reflux since early on, was failure to thrive and underwent a nissen fundo/Gtube placement. Wretched like crazy, which caused the wrap to herniate, had a re-wrap. His last UGI showed that his tummy empties slowly. He isn't gaining wieght and still vomits daily. Has been on reglan, zantac, prilosec, with no relief. Has anyone had any experience with erythromycin or domperidone? Any special formulas? Any suggestions for ways to bump calories without adding fluid? I am still seeing the surgeon, but not helping. I am taking him to a new GI, but not until September. I just hate to see him suffer! Sorry for the long post, thanks for any input. Kim Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 ok - I asked my surgeon and the nutritionist about specialized formula - he is on pediasure currently - and they said those were for malabsorbtion and he doesn't have diarrhea so he isn't malabsorbing. Did Theresa have diarrhea? Re: motility questions Hi Kim, Theresa has had motility issues her entire lifetoo. We finally were able to get her to gain weightusing vivonex formula...warning it is a prescriptionone and one of the stinkiest ha. It is a specializedelemental amino acid formula for ages 1 to 10. Its ina powdered form that you have to mix though and isextremely expensive. Our insurance covers it withoutquestion though. It is worth asking about. Its meantto manage maldigestion and malabsorption (not tomention that it produces very little waste so it alsodoes help with constipation problems). We still usereglan, zantac, prevacid, Miralax ( I love that one).senekot, and milk of mag to keep things moving alongand a little less acidic though. Since starting on Vivonex in I think it was lateNov or Dec.. she went from 17 lbs to a whopping 32lbs! She had been on several others and was stilllosing weight. It is also the only formula they canfind with no sugars in it. She can have no fructose,sucrose or sorbitol in any form. Makes finding evenspecialized formulas difficult. Good luck! Kimberley--- batt504 wrote:> Hi! I am one of the newer members who doesnt' post> often. I haven't > posted, though I read daily, becuase my son hasn't> been formally > diagnosed. We have an appointment in Atlanta in> August. I have > gotten some good info from this board, and it helps> to know other > people are dealing with the same issues my family> is. Anyway, I am > writing to see if anyone has had problems with GI> motility and what, > if anything, worked for their child. A brief> overview: Russ is 17 > months, very hypotonic (doesn't roll, sit, etc.),but> is alert and > attentive and can use his hands when he is in a> supported position. > He has had trouble with reflux since early on, was> failure to thrive > and underwent a nissen fundo/Gtube placement.> Wretched like crazy, > which caused the wrap to herniate, had a re-wrap.> His last UGI > showed that his tummy empties slowly. He isn't> gaining wieght and > still vomits daily. Has been on reglan, zantac,> prilosec, with no > relief.> Has anyone had any experience with erythromycin or> domperidone? Any > special formulas? Any suggestions for ways to bump> calories without > adding fluid? I am still seeing the surgeon, but not> helping. I am > taking him to a new GI, but not until September. I> just hate to see > him suffer! Sorry for the long post, thanks for any> input. Kim> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 No she s pretty much never had diareah. She is always constipated its simply to what degree. The only time she has ever had diareah is right after a disimpaction or when she had enterocolitus. They put her on it because of her weight loss and its lack of sugar.. plus it produces less wastes so they thought that would be the best for her. Kimberley --- kim battles wrote: > ok - I asked my surgeon and the nutritionist about > specialized formula - he is on pediasure currently - > and they said those were for malabsorbtion and he > doesn't have diarrhea so he isn't malabsorbing. Did > Theresa have diarrhea? > Re: motility questions > > > Hi Kim, > Theresa has had motility issues her entire life > too. We finally were able to get her to gain > weight > using vivonex formula...warning it is a > prescription > one and one of the stinkiest ha. It is a > specialized > elemental amino acid formula for ages 1 to 10. Its > in > a powdered form that you have to mix though and is > extremely expensive. Our insurance covers it > without > question though. It is worth asking about. Its > meant > to manage maldigestion and malabsorption (not to > mention that it produces very little waste so it > also > does help with constipation problems). We still > use > reglan, zantac, prevacid, Miralax ( I love that > one). > senekot, and milk of mag to keep things moving > along > and a little less acidic though. > Since starting on Vivonex in I think it was > late > Nov or Dec.. she went from 17 lbs to a whopping 32 > lbs! She had been on several others and was still > losing weight. It is also the only formula they > can > find with no sugars in it. She can have no > fructose, > sucrose or sorbitol in any form. Makes finding > even > specialized formulas difficult. Good luck! > Kimberley > > > --- batt504 wrote: > > Hi! I am one of the newer members who doesnt' > post > > often. I haven't > > posted, though I read daily, becuase my son > hasn't > > been formally > > diagnosed. We have an appointment in Atlanta in > > August. I have > > gotten some good info from this board, and it > helps > > to know other > > people are dealing with the same issues my > family > > is. Anyway, I am > > writing to see if anyone has had problems with > GI > > motility and what, > > if anything, worked for their child. A brief > > overview: Russ is 17 > > months, very hypotonic (doesn't roll, sit, > etc.),but > > is alert and > > attentive and can use his hands when he is in a > > supported position. > > He has had trouble with reflux since early on, > was > > failure to thrive > > and underwent a nissen fundo/Gtube placement. > > Wretched like crazy, > > which caused the wrap to herniate, had a > re-wrap. > > His last UGI > > showed that his tummy empties slowly. He isn't > > gaining wieght and > > still vomits daily. Has been on reglan, zantac, > > prilosec, with no > > relief. > > Has anyone had any experience with erythromycin > or > > domperidone? Any > > special formulas? Any suggestions for ways to > bump > > calories without > > adding fluid? I am still seeing the surgeon, but > not > > helping. I am > > taking him to a new GI, but not until September. > I > > just hate to see > > him suffer! Sorry for the long post, thanks for > any > > input. Kim > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 We get the formula from Whole Foods or Wild Oats. They are the local health food grocery stores in town. The name of the formula is Baby's Only by Natures One. naturesone.com or call Good luck. Bec > What is the name of the formula and where did you find it? Russ was on Alimentum with added polycose when he was under a year old. I'd love to try the soy/brown rice. > Re: motility questions > > > Kim, > > My son sounds a lot like mine... > > Spenc is 16 months old. Until May, 2002 - didn't sit, rolled front > to back but not for mobility, babbled only in the evening, vomited > daily, seizures, reflux, ataxia, nystagmus. Spenc was hospitalized > for 9 days in April with dehydration. He was in the 5th% of weight. > > The GI Doc put him on Zofran during the day. But since Spenc was > still vomiting through the meds, we changed to Periactin. Then Spenc > started having 100+ Absence Seizures a day cuz the antivomiting meds > lowered his seizure threshold. sigh... > > I knew Spenc had a milk allergy so had changed his formula to > Alimentum. However, the Allergist stated that some kids with milk > protein allergy don't tolerate hydrosolate milk (pre-digested). > Spenc had also tested positive for corn allergy. The first 2 > ingredients in various formulas we tried were milk and corn syrup. > > The GI Doc stated that Spencers vomiting looked a lot like an > abdominal migraine. My first thought was OMG! I get HORRIBLE > migraines from CORN! I also cannot tolerate hydrosolate milk > products. > > I changed Spencers formula to a Soy / brown rice formula. Within 2 > weeks Spencers vomiting virtually STOPPED!!!! He has stunned the > team with this change. In the last 7 weeks, Spencer has vomited once > a week. That is so huge!!!!! He is only on the Periactin when he > vomits. > > We tried the Peptimum Jr. It is high caloric but Spencer still > vomited it. Spencer doesn't vomit this stuff. The Dev Ped sent us > to the Nutritionist yesterday to make sure Spencer is receiving all > the nutrition he needs in the new formula. We may have to add > vitamins. Will let you know on that one. We bump up the calories to > 24 cals per ounce verses 20 cals. I did the math to increase. > Instead of 5 tablespoons per 8 ounces I add 6. You do need to do > some math to make sure you have the correct amount. Let me know if > you need my equation. > > I would encourage you to check him for allergies. I have heard that > many people with mito disorders have milk protein issues. I have > also been hearing a lot about sugar issues. My 5 yo and myself both > have sugar issues. Trevor is completely sugar, honey, corn syrup, > brown rice syrup intolerant. hmmmm Curiouser and curiouser. > > I learned through this wonderful group of people about carbo > loading. With Spencers last bottle of the day, I add 2 tablespoons > of Tapioca Flour. > > Almost forgot... How could I?! Until May, Spenc could not eat 1 or > 2 bites of solid foods without gagging and vomiting. He was > thisclose to a feeding tube. NOW??? Spenc eats 10+ ounces of #2 > solid baby foods a day! > > Spencer can now sit unassisted. In May, he sat with his nose 1 inch > from the floor. He had no torso strength. He couldn't use his hands > for play. He now can not only SIT unsupported. He uses his hands > for play. He starts the day babbling and playing. Whereas, he > didn't do that until 5 pm previously. He rolls across the room. He > can get his torso off the floor for 5 seconds when he is on his > tummy. The Docs and medical professionals are all amazed that he > made this progression in a couple of months after being " stuck " for 6 > months. > > Spenc has a long way to go but he has gone a million miles since May > in my book. > > Formula change and carbo loading. > > Good luck. > > Bec > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I was dxed with malabsorbtion in May of 2000. So, I have a bit of information on this issue. Yes, diarrhea is a clue that you are malabsorbing. However, malabsorbtion is a double sided coin. 1st - If your food runs through you too quickly for your body to absorb the nutrients, you would have diarrhea. This can be caused by gluten or wheat allergy. It can also be caused by Ibuprophen abuse. With both of these issues, the celia lay down from the rapidly moving bowels. The Celia are suppose to stand up and " catch " the nutrients as the food moves through the bowels. This is the issue to which your Doc was referring. 2nd - In my case because of the Ibuprophen abuse, my pours on the inside of my intestinal wall were too large allowing TOO much stuff to absorb INTO the body. Imagine a coffee filter that isn't working properly and you get grounds in your cup. I would think you could have one issue without the other. Just my 2 cents errr 37 cents. Bec > I have heard of this formula before and I asked the doc and he said Russ wasn't malabsorbing so it wouldn't help. He based this on the fact that Russ doesn't have diarrhea. Did your son have diarrhea? Is Peptimen Rx only? I would love to give it a try! > Re: motility questions > > > -Hello, > My son sounds quite similar. Hyotonic, reflux, GERD, Fundo and > persistant vomiting. He has also had a pyloroplasty surgery (opens > the opening out of the stomach to help empying) so his emptying > is " normal " now. He still vomits every day and to be honest we > really haven't found anything that works. I did want to tell you > that he had very poor weight gain until we tried a formula called > Peptimen Jr. When we put him on this new formula (he is g-tube fed) > he jumped from the 10% up to the 50% in about three months. We all > thought we had just weighed and measured him wrong! Since then we > have had no problem with growth. This formula is partially broken > down and easier to digest. Hope this is some help. It is sure worth > a try, we had used Alimentum, Pediasure, Compleat and this is the > only one that worked. > > Take Care, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Kim, Thanks! We are currently working on a dx. We are waiting for the enzyme results to return from NY. Long story but the lab hosed up and never sent it, then couldn't find it, then got confused on what to do to send it... Bla bla bla. They did the biopsy in April and we still don't have the results. In the meantime, the Dev Ped sent a referral to Dr. Shoffner with the expectation that the results from NY would be inconclusive. I think she is as concerned as we are that the Lab hosed up the muscle beyond usability. Does Russ have a dx? Bec > PS - congrats to Spence! That is terrific progress! Do you mind if I ask what type of mito disorder he has? He and Russ have similar symptoms. > Re: motility questions > > > Kim, > > My son sounds a lot like mine... > > Spenc is 16 months old. Until May, 2002 - didn't sit, rolled front > to back but not for mobility, babbled only in the evening, vomited > daily, seizures, reflux, ataxia, nystagmus. Spenc was hospitalized > for 9 days in April with dehydration. He was in the 5th% of weight. > > The GI Doc put him on Zofran during the day. But since Spenc was > still vomiting through the meds, we changed to Periactin. Then Spenc > started having 100+ Absence Seizures a day cuz the antivomiting meds > lowered his seizure threshold. sigh... > > I knew Spenc had a milk allergy so had changed his formula to > Alimentum. However, the Allergist stated that some kids with milk > protein allergy don't tolerate hydrosolate milk (pre-digested). > Spenc had also tested positive for corn allergy. The first 2 > ingredients in various formulas we tried were milk and corn syrup. > > The GI Doc stated that Spencers vomiting looked a lot like an > abdominal migraine. My first thought was OMG! I get HORRIBLE > migraines from CORN! I also cannot tolerate hydrosolate milk > products. > > I changed Spencers formula to a Soy / brown rice formula. Within 2 > weeks Spencers vomiting virtually STOPPED!!!! He has stunned the > team with this change. In the last 7 weeks, Spencer has vomited once > a week. That is so huge!!!!! He is only on the Periactin when he > vomits. > > We tried the Peptimum Jr. It is high caloric but Spencer still > vomited it. Spencer doesn't vomit this stuff. The Dev Ped sent us > to the Nutritionist yesterday to make sure Spencer is receiving all > the nutrition he needs in the new formula. We may have to add > vitamins. Will let you know on that one. We bump up the calories to > 24 cals per ounce verses 20 cals. I did the math to increase. > Instead of 5 tablespoons per 8 ounces I add 6. You do need to do > some math to make sure you have the correct amount. Let me know if > you need my equation. > > I would encourage you to check him for allergies. I have heard that > many people with mito disorders have milk protein issues. I have > also been hearing a lot about sugar issues. My 5 yo and myself both > have sugar issues. Trevor is completely sugar, honey, corn syrup, > brown rice syrup intolerant. hmmmm Curiouser and curiouser. > > I learned through this wonderful group of people about carbo > loading. With Spencers last bottle of the day, I add 2 tablespoons > of Tapioca Flour. > > Almost forgot... How could I?! Until May, Spenc could not eat 1 or > 2 bites of solid foods without gagging and vomiting. He was > thisclose to a feeding tube. NOW??? Spenc eats 10+ ounces of #2 > solid baby foods a day! > > Spencer can now sit unassisted. In May, he sat with his nose 1 inch > from the floor. He had no torso strength. He couldn't use his hands > for play. He now can not only SIT unsupported. He uses his hands > for play. He starts the day babbling and playing. Whereas, he > didn't do that until 5 pm previously. He rolls across the room. He > can get his torso off the floor for 5 seconds when he is on his > tummy. The Docs and medical professionals are all amazed that he > made this progression in a couple of months after being " stuck " for 6 > months. > > Spenc has a long way to go but he has gone a million miles since May > in my book. > > Formula change and carbo loading. > > Good luck. > > Bec > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 -Ronan does have loose stools rather than the constipation that is common with mito. I wouldn't say he has diarrhea though sometimes he does. The peptimen has not really changed his stools or his vomiting but it really changed his growth curve. He was on Alimentum before but the caloric density was just not high enough, we were drowning him in fluid to get enough calories and he did not tolerate polycose well. I don't think Peptimen is a Rx, just VERY expensive. Here in Canada is is just about $10 /can (250ml can) Ronan uses 4.5 cans per day over $850 /month. Ouch ...luckily we have support that pays for it (government agency here in Canada). Good Luck, -- In Mito@y..., " kim battles " <batt504@b...> wrote: > I have heard of this formula before and I asked the doc and he said Russ wasn't malabsorbing so it wouldn't help. He based this on the fact that Russ doesn't have diarrhea. Did your son have diarrhea? Is Peptimen Rx only? I would love to give it a try! > Re: motility questions > > > -Hello, > My son sounds quite similar. Hyotonic, reflux, GERD, Fundo and > persistant vomiting. He has also had a pyloroplasty surgery (opens > the opening out of the stomach to help empying) so his emptying > is " normal " now. He still vomits every day and to be honest we > really haven't found anything that works. I did want to tell you > that he had very poor weight gain until we tried a formula called > Peptimen Jr. When we put him on this new formula (he is g-tube fed) > he jumped from the 10% up to the 50% in about three months. We all > thought we had just weighed and measured him wrong! Since then we > have had no problem with growth. This formula is partially broken > down and easier to digest. Hope this is some help. It is sure worth > a try, we had used Alimentum, Pediasure, Compleat and this is the > only one that worked. > > Take Care, > > > > Quote Link to comment Share on other sites More sharing options...
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